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A number of parents have contacted the support group seeking information and guidance concerning 'gender reinforcement' surgery in their children. The following information is provided in an attempt to encourage parents to make a considered and informed decision about whether or not to consent to surgery.
There are essentially two related, but somewhat separated, situations here. Firstly, there is the situation where at birth a baby has genitals that are 'ambiguous' (i.e. not typical of either of the two currently recognized sexes) such that questions arise about the appropriate sex of rearing and about whether surgery should be employed to reinforce the chosen gender, and secondly there is the situation where the child is clearly at the female end of the male/female continuum of genital appearance but has a larger than average clitoris.
We appreciate that parents are motivated by the desire to minimize any psychological trauma in their child associated with having un-typical genitalia and by the earnest concern that their child should 'fit in' with his or her peers. While we can state with authority that psychological counselling and peer support from other intersex individuals in childhood and early adulthood are absolutely critical to achieving a positive outcome, the same assurance cannot be given regarding surgical intervention in infancy/childhood.
Although some intersexed adults are now choosing to identify as 'intersexed' rather than as 'male' or 'female' we would still favour raising an intersexed child in one of the two conventional social genders. However, we consider the practice of reinforcing that social gender by surgery to be less clear cut.
A note on terminology: The medical literature often employs the term 'phallus' to refer to either the penis or the clitoris (since both originate from the same primitive tissue during foetal development). Surgery on the penis is often referred to as 'phalloplasty'. When describing a clitoris that is somewhat larger than average, some people use the term 'phallo-clit'. The term 'clitoromegaly' is sometime used in medical texts to refer to the state of having a larger-than-average clitoris.
The argument for surgical intervention is rooted in the (now highly debated) theory, initially developed in the 1950s, that at birth infants' brains have not been biologically imprinted or pre-programmed with a particular gender and that 'nurture' (i.e. how a child is reared, and the gender cues such a child receives from its parents and peers) will ultimately determine gender identity. This is sometimes explained in the popular press by the crass statement that "If you put them in a blue room they grow up as boys... put them in a pink room and they become girls".
The other key component of this theory is that a child's perception of its own genitals is also critical to the way in which gender identity develops; that if a child looks down and sees a penis then it will develop a male gender identity, and if it looks down and sees no penis then it will develop a female gender identity. This is completely unproven, but is probably the biggest underlying assumption made by doctors performing genital surgery on infants. But gender development is not understood even at the most basic level. It is a complex and mystical process, and we don't even know the age at which a sense of gender begins to develop.
The most vigourous promoter of the surgical intervention theory was perhaps John Money Ph.D. of Johns Hopkins University in the US, who posited that intersex infants born with 'ambiguous' genitalia could be reared as either male or female with equally positive outcomes as long as the genital appearance is in alignment with the assigned gender. Money stated that on this basis it was appropriate to perform genital surgery on infants before any assessment could be made of the child's own expression of gender. Consequently, starting in the 1950s, the paradigm of medical management of such infants became one of early surgical intervention to conform the genitals to the gender of assignment. In the overwhelming majority of cases this meant a surgical 'feminizing' of intersexed infants.
Surgeons have further rationalized this practice by arguing that the creation of a typical sized functional male penis is more difficult that the creation of a vagina. Again, the popular press has latched onto a flippant remark made by a clinician in the 1950s/60s that, "It's easier to dig a hole, than to build a pole." However, as mentioned elsewhere on this site (see Vaginal Hypoplasia), there is good reason to question the legitimacy of such a thesis, given the current inadequacies of vaginoplasty surgery. In fact, the medical literature describing paediatric gender reinforcement surgery usually makes very little mention of the creation of the vagina; all the emphasis is placed on the reducing the size of the penis/clitoris. It's almost as if paediatric surgeons (most of whom will be urologists rather than gynaecologists) are -- in leaving it for someone else to deal with when the child reaches maturity -- just assuming that vaginoplasty will be unproblematic. There are no studies that follow up these surgically 'half-feminized' infants to determine whether the second part of the feminizing process, the creation of a vagina, is successful in later life. As long as the offending small penis or large clitoris has been removed/reduced, that's all that seems to matter.
We might add at this point that we totally decry the practice, advocated by some clinicians, of performing vaginoplasty in infants/children. If surgical vaginplasty is to be carried out at all (and it is possible that better results can presently be obtained via pressure dilation anyway - see Vaginal Hypoplasia) it is far better to consider this, and other gender related surgical procedures, once the tissues have stopped growing and reached their adult state; and at a time when the patient can have a say in what is being proposed. It seems to us that the practice of childhood vaginal surgery, like that of gonadectomy in infancy/childhood, has more to do with clinicians (and parents in some cases) not wanting to face telling a teenager the truth about her diagnosis, than with obtaining the best possible psychosexual outcome for the patient.
One of our medical advisors, Miss Sarah Creighton (Consultant Gynaecologist, Middlesex/UCL Hospitals, London) who is a gynaecological surgery specialist (see Recommended Clinicians), told us at an 'AIS open day' clinic in Spring 2000 that over the last 5 years she and her colleagues had examined some 46 adolescents under anaesthetic whod had gender corrective surgery in infancy/childhood and that 90% would require further surgery to correct the inadequacies of the early intervention.
John Money's theory that nurture (upbringing, social conditioning) and not nature (foetal brain androgenisation, i.e. male gender imprinting) is the critical variable in determining gender was for a while thought to be confirmed by the case of David Reimer (the so-called "John/Joan" case). David ("John") was not born intersexed but was a typical male baby whose penis was lost in a surgical accident during a routine circumcision operation) in the 1960s. On Money's recommendation, "John" was reared as "Joan" on the assumption that without a penis John could never assume a male gender identity or function in society as a male. Money saw this as a unique opportunity to prove to the world the malleability of gender.
Over the ensuing years Money widely reported in the medical literature that this course of action had been wholly successful and that John had readily assumed the gender role of Joan. Using this reported outcome to support the notion of early surgical intervention in intersexed infants, paediatric endocrinologists and paediatric urologists failed to widely question either the efficacy or the ethical propriety of this practice.
Only recently has the true outcome of the John/Joan case been reported by Diamond and Sigmundson (see refs at end of page) and "John" himself has gone public using his real name (David Reimer) and has co-operated in the writing of a book telling his story. It has now been confirmed that John was never content in the role of "Joan" despite surgery to remove his testes and despite an extended course of oestrogen therapy resulting in breast development. Indeed, in later adolescence Joan reverted to living as John, and married a woman, in his re-assumed male gender identity. Sadly, David committed suicide in mid-2004 at the age of 38.
See http://www.bbc.co.uk/programmes/b00t97xf to listen to a BBC Radio 4 programme, John/Joan - The Boy Who Was Raised as a Girl, broadcast on Wed, 18 Aug 2010, at 11:00.
As mentioned in the introduction, apart from the question of using surgery to reinforce a gender assignment in cases of ambiguous genitalia, there is also the debate about surgery to reduce the size of a larger-than-average clitoris in an infant/child that is clearly female. The Intersex Society of North America (ISNA) (see Links to Other Sites) whose membership includes a substantial number of adults who were subjected to genital surgery in infancy, has concerns that surgery may result in diminished sexual sensation due to nerve damage in the course of clitoral/phallic reconstruction, and in the production of scar tissue which may cause pain and reduced sensation. We have adult women members in our support group who have had such surgery and who do have a sex life, but we also have adult women who would certainly have been candidates for, but who have escaped such cosmetic surgery and who are perfectly content with their situation. A member of our group emailed to other group members as follows, during a discussion about surgery:
I never had the clitoral recession surgery myself, although I certainly would be a candidate for one. I'm realizing that I had some very strangely apathetic care growing up, and no one ever mentioned the possibility of surgery to me. I don't know if I just had enlightened doctors who saw no need to normalize me or what, but it was an un-subject and never discussed at all.
I was/am a pretty traumatized kid over the whole AIS thing, especially the enlarged clitoris, which I never spoke of to anyone (the last mention to another human being about it, before finding the [AIS email] circle and especially ______ [another group member in similar situation], was my Mom telling me as a young kid not to worry about it, that I would grow into it. Wrong, Mom, but it was a nice try). The idea of someone seeing me naked, someone seeing that 'thing' mortified me to a degree I still haven't conquered. I shut off the entire idea of relationships and sex for this lifetime because I didn't think I would ever find someone who could understand or accept it, not that I would have thought about giving anyone half a chance to come to any understanding or acceptance.
Now, as I climb toward that mystical age 30 mark, I feel like I'm finally getting my life into some kind of order and coming to believe in the fact that I can have a normal, happy life. Since finding the support group and the circle, I'm a lot happier with my lot in life and realize that I'm glad I didn't risk the loss of sensitivity through the surgery. I realize now that it is not impossible to find someone who would understand and love me for me, and who would not worry, to the extent that I do, about the size of my clitoris. It bothers me a lot that I can't be totally sure whether B.C. (Before Contact) [with the group] I would have gotten the surgery, but with the realizations I've come to since then, I'm glad that I didn't do it. More than anything, I want to make sure that someone who does it has had the chance for those realizations that came to me relatively late in life.
Clincians who advocate such surgery say that the older practice of clitorectomy (i.e. complete removal of the clitoris or phallo-clit) is no longer practiced and that the newer method of clitoral recession, in which the clitoris is reduced in length but with the nerve supply supposedly being maintained, poses no threat to erotic sensation. Intersex advocacy groups like ISNA, and some clinicians, claim that this is not necessarily true.
Despite the recent revelation of the true outcome of the John/Joan case (a single 'experiment' on which the clinical management of several generations of intersex infants has been based) there has not been a concomittant wholesale re-examination of the propriety of making gender assignments based solely on the length of the micro-phallus, and of surgically altering such genital structures to conform with the assigned gender. Recently, however, a few physicians and other health care professionals (see refs by Diamond, Wilson, Schober) who have concerns about the long-term outcome of such surgically altered infants, have called for a moratorium on genital surgeries until comprehensive retrospective studies have been undertaken to assess the benefits and drawbacks of surgery.
Other clinicians, as well as ISNA, have called for an outright ban on such surgeries. ISNA's position is perhaps reinforced by recent studies (e.g. Woodhouse) demonstrating that intersexed individuals with a micro-penis who are reared as males, and who do not undergo any surgery to lengthen the phallus, report that they are able to enjoy satisfactory sexual relations. Indeed, many have become married. In many instances, the conventional medical practice would have been to surgically reduce the phallus to simulate the appearance of a typical clitoris, and these same indvduals would have been reared as female. There is reason to question whether such management would have yielded as satisfactory an outcome.
In one recent study by Reiner, [need the ref to the paper] of patients with a condition called cloacal exstrophy (a condition in which an XY baby is born with severe lower abdominal abnormalities and malformed genitals) whose testes were removed and who were reared as female and underwent surgery to create a vagina (vaginoplasty), approximately two thirds of the patients elected in adulthood to live as men, with the consquence that the surgery performed in infancy was inappropriate for the gender role they chose to assume in later childhood and adulthood.
This questioning by a growing number of clinicians of the conventional practice is occurring in parallel with (or, one might say, prompted by...) a newly found confidence amongst intersexuals that has emerged since the early 1990's, helped by the advent of the internet and email communications. These intersexed adults are trying to break down the barriers of silence, shame and secrecy that have enabled such surgeries to be done without the informed consent of the indivuals concerned; and that has prevented outcome studies from being carried out. Doctors are "hoisted by their own petard" here since they can't ask patients about the success/failure of a surgical procedure if that procedure was been done without telling the patient about it or, in many cases, without even telling them about their underlying intersex condition.
There is also the feminist view that this type of surgery is rooted, at least partly, in a fear by a male-dominated medical profession of the notion of a) an undersized phallus on a male person, and of b) a structure that resembles, however slightly, a male phallus on a female person. See Debates/Discussions page for an interesting discussion of this ("Re-membering a Queer Body"). In some societies (e.g. in some Asian countries) intersexed infants that would have been 'feminized' by surgery in N. America and Western Europe are raised as males without any surgery, because of the kudos associated with having male children. This illustrates the fact that many of these decisions regarding surgery are as much cultural as medical. We recommend Suzanne Kessler's article The Medical Construction of Gender: Case Management of Intersexed Infants, published in Signs, the Journal of Women in Culture and Society, Autumn 1990 (click here to see a precis of the article prepared by the support group). See references at foot of page for information on Suzanne Kessler's 1998 book, Lessons from the Intersexed.
Some adult intersexuals also object to the overwhelming 'heterosexual imperative' that is assumed in the treatment of intersexed infants, i.e. that a woman will always want a vagina in order to be penetrated by a man, and that a man will always want a penis in order to penetrate a woman.
Performing surgery on genitals to influence gender development is unproven, but doctors don't think enough about why they are even suggesting surgery.
Unfortunately, no comprehensive follow-up studies have yet been undertaken to assess the long-term outcome of populations of intersexed infants who were subjected to surgery as well as those who were assigned a gender but without surgical intervention. The medical community broadly acknowledges the need for such studies. Indeed, the recently formed (end of 1999) North America Task Force on Intersexuality (NATFI) -- a consortium of paediatric endocrinologists, paediatric urologists, mental health professionals and two individuals who are themselves intersexed -- has announced the goal of undertaking such studies, with the objective of improving the health care and psychological welfare of intersexed infants.
Paediatric endocrinologist Dr. Garry Warne (see Recommended Clinicians) and colleagues are setting up (late 2000) a consortium called the MCRI Sex Study Group, funded by the Murdoch Children's Research Institute. It will carry out an epidemiological study of long term outcomes of intersex patients and others born with atypical genitalia treated at the Melbourne Royal Children's Hospital. They plan to include girls with CAH and men born with perineal hypospadias and/or micropenis.
The AIS Support Group strongly supports such efforts and calls on the medical community at large to undertake similar studies, so that physician recommendations can be based on objective data rather than on speculation. As such data becomes available, the support group looks forward to publishing it on this web site so that parents confronted by this challenging situation can be guided by current and accurate information.
Dr. Cathy Minto (Gynaecology Research Fellow, Middlesex/UCL Hospitals, London) who is one of our advisors (see Recommended Clinicians), makes the following recommendation:
"A crucial aspect for parents to consider when faced with a child whose genitalia have been labelled as "abnormal", is who has evaluated the genitalia, how experienced are they and what are they basing their assessment on? Parents should feel able to ask as many questions as they want, ask for many second opinions and have a clear idea of what is being discussed.
Paediatric urologists do not have a clear idea of the range of sizes of female genitals, and spend most of their time with penises. We [gynaecologists] are aways being asked by 'expert' paediatric urologists, what the anatomy and normal sizes of the clitoris and labia are. Other specialists (general surgeons especially, and plastic surgeons) will not know the normal range. Most adult gynaecologists are also completely inexperienced in childhood female genitals, and should not be evaluating children. A child's clitoris can often look relatively big due to the flattened labia and lack of fat and pubic hair. There is a huge range, and if you do not know this you will do unnecessary surgery. The surgery will have consequences on the child's future sexual life; we just do not have much data yet to quantify the degree of damage.
Parents need to ask for expert opinions, and from more than one consultant where possible, with plenty of time; and with expert psychologists taking a leading role in the discussions. Although this is idealistic, parents should expect and demand such a service."
The following paragraph is from p. 138 of Katrina Karkarzis's 2008 book 'Fixing Sex: Intersex, Medical Authority, and Lived Experience' (Duke University Press), which is essenitial reading for all parents of intersex children:
Genital surgery, then, seeks to produce genitals that not only conform to the gender of the infant but that stabilize particular forms of sexual desire and behavior. By reflecting and reinscribing social norms and expectations for appropriate female and male desire and behavior, genital surgery enables and disables certain sexual acts and thus certain ways of being. The assumption that infants need particular genital configurations to help them fulfill these expectations comes at the expense of leaving intact those body parts that enable sexual staisfaction. As a result, concerns about sexual pleasure have been secondary to ideas about normative bodies and the sexual practices in which they are expected to engage. Put another way, "penetration in the absence of pleasure takes precedence over pleasure in the absence of penetration" (Anne Fausto-Sterling : 'How to Build a Man', in 'Constructing Maculinity', ed. M. Berger, B. Wallis and S. Watson. New York: Routledge, 1995).
Surgery - For Whose Benefit? in ALIAS No. 3, Winter 1995
What are Genitals For? in ALIAS No. 3, Winter 1995
Surgical Patriarchy in ALIAS No. 3, Winter 1995
Medical Construction of Gender in ALIAS No. 4, Spring
Meanings of Genital Variability in ALIAS No. 4, Spring 1996
Nurture vs Nature in ALIAS No. 4, Spring 1996
News from ISNA in ALIAS No. 4, Spring 1996
Intersex Treatment Dialogue in ALIAS No. 5, Summer 1996
Dealing with Ambiguity in ALIAS No. 5, Summer 1996
"ISNA Recommendations" in ALIAS No. 7, Spring 1997
"What is Intersexuality?" in ALIAS No. 8, Summer 1997
"New Directions" in ALIAS No. 10, Winter 1997
"Gender Assignment/Surgery" in ALIAS No. 11, Spring 1998
"Surgery and Psychology" in ALIAS No. 11, Spring 1998
"Sensational Paradigm" in ALIAS No. 11, Spring 1998
"Advances and Challenges" in ALIAS No. 11, Spring 1998
"Prof. Diamond's Recent Papers" in ALIAS No. 14, Spring 1999
"US Intersex Taskforce" in ALIAS No. 17, Summer 2000
"Old Paradigm?", "New Paradigm?", "BAPU Meeting" and "A Stance on Surgery?" in ALIAS No. 18, Spring 2001
"Surgery Discussion in Circle" in ALIAS No. 19, Summer 2001
Note: Parents (who might well have difficulty obtaining individual medical journal articles) would be well advised to a) consult the summaries/digests of the various debates that are provided in the support group's newsletter ALIAS (relevant articles are listed under 'ALIAS Refs' above) and b) obtain the books marked ** (see under 'General Refs' below).
Dr. Milton Diamond (Pacific Center for Sex and Society, Hawaii - http://www.hawaii.edu/PCSS ) and Dr. Garry Warne (Royal Children's Hospital, Melbourne, Australia - http://www.rch.org.au ) have published a number of important papers both on genital surgery and on ethical issues such as truth disclosure and informed consent. Dr. Diamond's web site provides an up-to-date bibliography of his publications.
See Medical Literature Sites on our 'Links to Other Sites' page for ways of accessing journal articles.
van Seters A. and Slob A: Mutually Gratifying Heterosexual Relationship with Micropenis of Husband. Journal of Sex and Marital Therapy, 14/2 (1988), 98-107.
Reilly J.M. and Woodhouse C.R.J: Small Penis and the Male Sexual Role. The Journal of Urology 142 (1989): 569-572.
Kessler S: The Medical Construction of Gender: Case Management of Intersexed Infants (transcript) in Signs, the Journal of Women in Culture and Society, Autumn 1990). It may be possible to access original article via http://www.journals.uchicago.edu/signs/home.html ?).
Balsamo A: On the Cutting Edge: Cosmetic Surgery and the Technological Production of the Gendered Body. Camera Obscura, 28 (1992), 207-237.
Meyers-Seifer H. and Charest N: Diagnosis and Management of Patients with Ambiguous Genitalia. Seminars in Perinatology, 16 (1992), 332-339: 338.
Fausto-Sterling A: The Five Sexes: Why Male and Female are Not Enough in The Sciences, March/April 1993.
Re-membering a Queer Body (transcript and discussions) by Morgan Holmes. Article on the social attitudes that underpin the treatment of infants with 'ambiguous' genitalia. It appeared in Undercurrents (May 1994) published by the Faculty of Environmental Studies, York University, 4700 Keele St., North York, Ontario, Canada, M3J 1P3.
Woodhouse, C.R: The Sexual and Reproductive Consequences of Congenital Genitourinary Anomalies. Journal of Urology, Vol 152, pp 645-651, Aug 1994.
Tiefer L: The Medicalization of Impotence - Normalizing Phallocentrism. Gender and Society 8/3 (Sep 1994), 363-377.
M. Morgan Holmes: Queer Cut Bodies: Intersexuality and Homophobia in Medical Practice (1995).
Colapinto J: The True Story of John/Joan. Rolling Stone, 11 December (1997), 54-73 and 92-97.
Diamond M. & Sigmundson H.K: Management of Intersexuality: Guidelines for Dealing with Persons with Ambiguous Genitalia. Archives of Pediatric & Adolescent Medicine 151 (1997): 1046-50.
Diamond M. & Sigmundson H.K: Sex Reassignment at Birth: A Long Term Review and Clinical Implications. Archives of Pediatric and Adolescent Medicine (1997) 150:298-304.
Reiner W: Sex Assignment in the Neonate with Intersex or Inadequate Genitalia. Archives of Pediatrics and Adolescent Medicine 151/10 (Oct 1997), 1044-1045.
The Medical Management of Intersexed Children: An Analogue for Childhood Sexual Abuse. Article by Tamara Alexander (1997).
Groveman S: Medical, Psychological and Legal Issues in the Clinical Management of the Complete Androgen Insensitivity Syndrome Patient into Adulthood. A paper drafted in 1997 by Sherri Groveman who founded our sister group, AISSG US. It covers counselling, the clinical examination, truth disclosure, peer group support, vaginal construction, and gonadectomy and informed consent.
Chrysalis 'Intersex Awakening' issue. Special issue of Chrysalis: J. Transgressive Gender Identities. 2: 5, Fall 1997/Winter 1998. Articles by Morgan Holmes ('Is growing up in silence better than growing up different?'), Alice Dreger ('Doctors Containing Hermaphrodites: The Victorian Legacy'), Suzanne Kessler ('Meanings of Gender Variability: Constructs of Sex and Gender'), Tamara Alexander ('Silence = Death') and others. Available here or at http://www.isna.org/drupal/chrysalis. Some of the articles also appear in Intersex in the Age of Ethics, edited by Alice Dreger.
Greenberg J: Colombia High Court Limits Surgery on Intersexed Infants. Article on informed consent by Julie Greenberg (Professor of Law at Thomas Jefferson School of Law in San Diego) and Cheryl Chase (Intersex Society of North America, ISNA).
Dreger A.D: Ambiguous Sex or Ambivalent Medicine? Ethical Issues in the Treatment of Intersexuality. Hastings Center Report 28: 3 (1998): 24-36.
Schober J.M: Early Feminizing Genitoplasty. J. Ped. Adol. Gynec. 11: 154, 1998.
Warne G.L: Androgen Insensitivity in the Era of Molecular Genetics and the Internet. J. Pediat. Endoc. and Metab., Jan 1998.
Warne G.L: Advances and Challenges with Intersex Disorders, in Reprod., Fertil. and Development, 10: 79-85, 1998.
**Lessons from the Intersexed by Suzanne Kessler (Rutgers University Press, 1998, ISBN 0-8135-2530-6).
**Hermaphrodites and the Medical Invention of Sex by Alice Dreger (Harvard University Press, 1998, ISBN 0-674-08927-8)
Chase C: Surgical progress is not the answer to intersexuality. J. Clin. Ethics, 9: 385-92, 1998.
Coventry M: The Tyranny of the Esthetic: Surgery's Most Intimate Violation. OTI Online (Date? Summer 1998?), available at http://mosaic.echonyc.com/~onissues/su98coventry.html.
Kipnis K. & Diamond M: Pediatric Ethics and the Surgical Assignment of Sex. J. Clin. Ethics, Vol 9, No. 4, Dec 1998 (special intersex issue).
Wilson B.E. and Reiner W.G: Management of Intersex: A Shifting Paradigm. J. Clin. Ethics, Vol 9, No. 4, Dec 1998 (special intersex issue).
Slijper F.M.E. et al: Long-term psychological evaluation of intersex children. Arch. Sex. Behav., 27: 125-44, 1998. Diamond, M: Letter to the Editor: Intersexuality: Recommendations for management (responding to Slijper et al). Arch. Sex. Behav. , 27: 634–641, 1998. Note: Diamond's letter starts on p.8 of the PDF. Chase, C: Letter to the Editor (responding to Slijper et al) Arch. Sex. Behav., 28: 103–105, 1999. Slijper F.M.E. et al: Letter to the Editor. Response to Milton Diamond and Cheryl Chase. Arch. Sex. Behav., 29: 119-121, 2000.
Diamond M: Pediatric Management of Ambiguous and Traumatized Genitalia. J. Urology, 162, 1999(?).
Grupposo P.A: Should cosmetic surgery be performed on the genitals of children born with ambiguous genitals? No. Physician's Weekly, 16: 31, 1999.
**Intersex in the Age of Ethics edited by Alice Dreger (University Publishing Group, 1999, ISBN 1-55572-100-1). A book containing the articles from the special intersex issue of the J.Clinical Ethics plus additional articles, accounts written by intersexed people, photos etc. Available from US-based University Publishing Group using a credit card on 301 582-2200 (paperback, $19.95 plus ship/handle) or by email at firstname.lastname@example.org. See also http://www.upgbooks.com/page10.html.
Schober J.M: Long-Term Outcome of Feminizing Genitoplasty for Intersex. In P.D.E. Mouriquand (Ed.), Paediatric Surgery and Urology: Long Term Outcomes. Philadelphia, Penn: W.B. Saunders, 2000.
Scannel, K: Engendering Differences: Ethical Issues About Intersex. Ethics Rounds (Kaiser Permanente) 10(1): 1 (2001).
Groveman, S: Case commentary: Ethics primer for clinical management of intersex. Ethics Rounds (Kaiser Permanente) 10 (1):3-5 (2001). Analysis by founder of our US sister group of a case history based on a hypothetical baby (Jamie) with ambiguous genitalia.
Phalloplasty as an Alternative to Reassignment. Urology Times, Feb 2000.
**As Nature Made Him: The Boy Who Was Raised As a Girl by John Colapinto (February 2000; Harper Collins Publishers; ISBN: 0060192119). About the John/Joan case (John Money's circumcision accident twin). The twin has 'come out', has appeared on TV etc. under his real name (David Reimer), having reverted to the male role. It discredits Moneys theory that gender ID is based on upbringing and describes Milton Diamonds part in revealing the true outcome of the experiment.
Fausto-Sterling A: The Five Sexes Revisited: Why Male and Female are Not Enough in The Sciences, July/Aug 2000.
Michelle Morgan LeFay Holmes, PhD: The Doctor Will Fix Everything: Intersexuality in Contemporary Culture. Dissertation, Concordia University (Canada) 2000. You can download this dissertation (254 pages, PDF format,10mb) from here, having first paid a $23 fee for a PIN number and quoting PDF Ref. AAT NQ47720.
**Sexing the Body: Gender Politics and the Construction of Sexuality by Anne Fausto-Sterling (New York, Basic Books, 2000). See her home page at http://biomed.brown.edu/Faculty/F/Fausto-Sterling.html.
Daaboul J. and Frader J: Ethics and management of the patient with intersex: a middle way. J. Pediatr. Endocrinol. Metab. 14: 1575-1883, 2001.
Melton Lisa: New Perspectives on the Management of Intersex. The Lancet (http://www.thelancet.com/journal), Vol 357, 30 June, 2001 (or here - see fourth page). See also Vol. 358, 15 Dec 2001, pp 2085-2086 for a response from an intersexed person (who is also a philosopher of science) and a reply from Catherine Minto, Julie Alderson and Adam Balen (available here - see eighth page).
Ford K-K: The fiction of legal parental consent to genital-normalizing surgery on intersexed infants. Yale Law and Policy Review 19 (469), 2001.
Creighton S.M., Minto C.L., Steele S.J: Objective Cosmetic and Anatomical Outcomes at Adolescence of Feminising Surgery for Ambiguous Genitalia done in Childhood. The Lancet (http://www.thelancet.com/journal), Vol 358, No. 9276, 14 July 2001 (or here).
Statement of British Association of Paediatric Surgeons Working Party on the Surgical Management of Children Born with Ambiguous Genitalia, July 2001.
Sarah Creighton and Catherine Minto: Managing Intersex: Most vaginal surgery in childhood should be deferred. (Editorial) British Medical Journal, 323: 1264-1295 (1 Dec 2001).
Schober, J. M: Sexual behaviors, sexual orientation and gender identity in adult intersexuals: A pilot study. Journal of Urology, 165, 2350-2353 (2001).
Boy or Girl? Dr. Garry Warne (paed. endocrinologist) and Dr. Sonia Grover (gynaecologist) from Melbourne, Australia, took part in this national radio broadcast about genital surgery (The Health Report, on ABC, 25 Feb 2002).
Cull Melissa: Treatment of intersex needs open discussion. (letter) BMJ, 13 April 2002, 324: 919.
Gayner J., Witchel S.F. and Lee P.A: Assessing care of intersex patients: Initial survey results. Pediatr. Res. 51: suppl 119A (abstract), 2002.
Kuhnle U. and Krahl W: The impact of culture on sex assignment and gender development in intersex patients. Perspectives in Biology and Medicine. 45: 85-103, 2002.
Minto C. and Creighton S: Feminizing Genitoplasty: Rethinking Surgical Indications, Benefits and Risks. In Dialogues in Pediatric Urology Intersex: Gender Identification, Outcomes and Controversies Part II, Volume 25, Number 7, July 2002.
Hrabovsky Z and Hutson J.M: Surgical Treatment of Intersex Abnormalities: A Review. Surgery, 131: 92-104, 2002.
Catherine L. Minto, Lih-Mei Liao, Christopher R.J. Woodhouse, Phillip Ransley, Sarah M. Creighton: The effect of clitoral surgery on sexual outcome in individuals who have intersex conditions with ambiguous genitalia: a cross-sectional study. The Lancet, Vol. 363, No. 9365, 12 April 2003. www.thelancet.com/journal/journal.isa
Minto C.L., Liao L.M., Woodhouse C.R.J., Ransley P.G., Creighton S.M: The effect of clitoral surgery on sexual outcome in individuals who have intersex conditions with ambiguous genitalia: a cross sectional study. The Lancet 361:1252-57, 2003.
Froukje M. E. Slijper: Clitoral surgery and sexual outcome in intersex conditions. Commentary on the paper by Minto et al above (in same issue of The Lancet, pp 1236-1237).
Warne G. L: Ethical Issues in Gender Assignment. The Endocrinologist (Special Issue). June? 2003.
Minto C. and Creighton S: Surgery for Intersex: An Overview of Technique and Outcome. Journal of Pediatric and Adolescent Gynecology. To be published 2003.
Chase C: What is the agenda of the intersex patient advocacy movement? Endocrinologist 2003; 13: 240-2. Available at http://www.isna.org/pdf/gubbio.pdf.
Creighton S. M., Minto C. L., Liao LM, Alderson J. and Simmonds M: Meeting Between Experts: Evaluation of the First UK Forum for Lay and Professional Experts in Intersex. Patient Education and Counselling, Volume 54, Issue 2, August 2004, pp 153-157 (also available on ScienceDirect). Discussion of the 'Intersex in the New Millennium' symposium, staged by UCLH clinicians and AISSG UK in Jan 2002 (see Announcements page on this site for details of the symposium).
Hutcheson J: Ambiguous Genitalia and Intersexuality. eMedicine.com under Pediatrics/Urology (Date?), available at http://author.emedicine.com/PED/topic1492.htm.
Ogilvy-Stewart A.L. and Brain C.E: Early Assessment of Ambiguous Genitalia. Archives of Disease in Childhood, 2004, 89: 401-407. http://adc.bmjjournals.com.
Morland I: Thinking with the Phallus. In: Liao LM. and Boyle M., editors. The Psychologist (Intersex special issue: "Born Different: People with Male and Female Characteristics"), Vol 17, No. 8, 448-450 (Aug 2004). Journal of the British Psychological Society (http://www.bps.org.uk/publications/thepsychologist.cfm).
Liao LM and Boyle M: Surgical Feminising: The Right Approach? In: Liao LM. and Boyle M., editors. The Psychologist (Intersex special issue: "Born Different: People with Male and Female Characteristics"), Vol 17, No. 8, 459-462 (Aug 2004). Journal of the British Psychological Society (http://www.bps.org.uk/publications/thepsychologist.cfm).
Diamond M. and Watson L.A: Androgen insensitivity syndrome and Klinefelter's syndrome: sex and gender considerations. Child and Adolescent Psychiatric Clinics of North America (Sex and Gender issue - Guest editors Milton Diamond and Alayne Yates) 13, (2004), 623-640. Paper that came out of a collaboration between Milton Diamond and the UK and US AIS support groups.
Creighton S.M: Long-term outcome of feminization surgery: the London experience. BJU Int 93 supp 3:44-46, 2004.
Creighton S.M., Liao L.M: Changing attitudes to sex assignment in intersex. BJU Int 93(5):659-664, 2004.
Preves, S: Out of the Operating Room and onto the Streets: Exploring the Impact of Intersex Media Activism. Res. Pol. Soc. 13: 179-223 (2004). Also reprinted in Cardozo Journal of Law & Gender 12(1):247-288 (2005). Text available here.
Brown J. and Warne G: Practical Management of the Intersex Infant. J. Pediatr. Endocrinol. & Metab. 18, 2-23 (2005).
Lloyd J., Crouch N., Minto C.L., Liao L.M., and Creighton S.M: Female Genital Appearance: "Normality" Unfolds. Br. J. Obs and Gyn., 112: 643-646, 2005.
Creighton S.M: Feminizing genital surgery: what should be done and when? J. Pediatr. Adolesc. Gynecol. 18(1):63-6, 2005.
Crouch N.S., Creighton S.M: Minimal surgical intervention in the management of intersex. J. Pediatr. Endocrinol. Metab. 17(12): 1591-6, 2005.
Chadwick P.M., Liao L.M., Boyle M: Size Matters: Experiences of atypical genital and sexual development in males. Journal of Health Psychology 10, 529-543, 2005.
Boyle M., Smith S., Liao L.M: Adult genital surgery for intersex women: a solution to what problem? Journal of Health Psychology 10, 573-584, (2005). Sue Smith gave informal feedback to AISSG about this (mainly vaginal) surgery study (see 13th UK Group Meeting in ALIAS No. 19).
Diamond M. and Glenn Beh H: The Right to be Wrong: Sex and Gender Decisions. In Ethics and Intersex, Sharon E. Sytsma (Ed.), Springer, 2006. See here for the book's contents list. Access (fee payable) via http://www.springerlink.com/content/q303r8/.
Howe E: Advances in Treating (Or Not Treating) Intersexed Persons: Understanding Reisistance to Change. In Ethics and Intersex, Sharon E. Sytsma (Ed.), Springer, 2006. See here for the book's contents list. Access (fee payable) via http://www.springerlink.com/content/q303r8/.
Creighton S: Adult Outcomes of Feminizing Surgery. In Ethics and Intersex, Sharon E. Sytsma (Ed.), Springer, 2006. See here for the book's contents list. Access (fee payable) via http://www.springerlink.com/content/q303r8/.
Crouch N.S., Creighton S.M: Long term functional outcomes of female genital reconstruction in childhood. BJU Int. April 2007.
Liao L.M., Creighton S.M: Requests for cosmetic genitoplasty: how should healthcare providers respond? British Medical Journal 334: 1090-1092, 2007.
Holmes M: Mind the Gaps: Intersex and the (Re-productive) Spaces in Disability Studies and Bioethics Bioethical Inquiry Vol 5 (2/3): 169-181, (2008).
A New View of a Woman's Body: A Fully Illustrated Guide. Federation of Feminist Women's Health Centers. New York: Simon and Schuster (1981) and Chalker R: The Clitoral Truth: The Secret World at Your Fingertips. New York: Seven Stories (2000). The above two works were cited by Katrina Karkarzis on p. 309 of her 2008 book Fixing Sex: Intersex, Medical Authority, and Lived Experience (Duke University Press) as works that show the range of variation in female genitalia, unlike most medical literature.
Birgit Kohler, Eva Kleinemeier, Anke Lux, Olaf Hiort, Annette Gruters, Ute Thyen, and the DSD Network Working Group: Satisfaction with Genital Surgery and Sexual Life of Adults with XY Disorders of Sex Development: Results from the German Clinical Evaluation Study J Clin Endocrinol Metab, February 2012, 97(2), (2012).
Decision-Making Principles for the Care of Infants, Children and Adolescents with Intersex Conditions. State of Victoria, Department of Health, Melbourne, Australia (2013). The speed with which the 2006 Chicago "Consensus" Statement was adopted has disguised a continuing debate within medical circles surrounding the treatment values it promotes, and the adoption of the term Disorder of Sex Development. It can often appear that medics have closed ranks around that document. But that impression would be misleading. A new guidelines document from Australia boycotts the term DSD entirely, and moves away from endorsing Chicago, to embrace the possibilities of a wider understanding and acceptance of different gender expressions, and a more flexible approach to treatment values.
Involuntary or Coerced Sterilisation of Intersex People in Australia. Enquiry report by Australian Senate Community Affairs References Committee (October 2013). Echoes the preceding report in this list in recommending that the term Disorders of Sex Development be abandoned, and making a number of other recommendations.
Note: there is an overlap between issues of genital surgery, informed consent and truth disclosure. Some of the articles listed at the bottom of our Obtaining/Facing Diagnosis page may therefore cover the way in which intersex is handled surgically by the medical profession. See also AIS in Articles/Books page.